NicaSweety's Blog

On March 26, 2008 Governor John E. Baldacci signed LD 2109, An Act Relating to Insurance Coverage for Colorectal Cancer Early Detection. The bill requires health insurance policies issued or renewed after Jan. 1, 2009, to provide coverage for colorectal cancer screenings.
“We know that the five-year survival rate for those who detected their colon cancer early is 90 percent, but only 39 percent of colon cancers are diagnosed at this stage,” Governor Baldacci said. “That’s why this bill is so important. The bill requires coverage for colorectal cancer screening recommended by health care providers.”

Governor Baldacci was joined at the signing by bill sponsor, Rep. Edward Mazurek (D-Rockland), co-sponsors of the legislation, cancer survivors, caregivers and representatives from the American Cancer Society.

Earlier in the year, Governor Baldacci proclaimed the month of March as Colon Cancer Awareness Month in the State of Maine.

I was invited by the American Cancer Society to testify in favor of this bill, it was an honor to be able to participate knowing it will impact the lives of so many people, this bill is so important because it will benefit people 50 years or older, people younger with family history of colon cancer or younger than 50 and symptomatic, as of January 2009 insurance companies will have to pay for screening, since colon cancer is preventable if detected early it is treatable.

The American Cancer Society ACN, Fight Back Express is Coming to Maine :

On May 20th, there will be a rally and conference at the Augusta Capitol Park, where the ACS CAN bus will be from 3:30 to 5:00pm.

We will have an opportunity to sign the bus, sign a petition to the candidates for President to make access to care a priority for his/her administration, and join the Cancer Action Network.

The speakers include, Governor Baldacci, members of Congress, attorney general, health cancer survivors and advocates as well as health care activists.

To finish the celebration on a high note at 5:00 until 7:00 there will be a fun-raiser at a local restaurant with food, silent auction, cash bar and a great time getting together after a long day.

For more information visit www.acscan.org/bus

During March – Colorectal Cancer Awareness Month – put your colorectal cancer awareness to work and help us pass butt covering legislation.

In about 10 days, colorectal cancer advocates will be on Capitol Hill urging their Members of Congress to support the three pieces of legislation that are supported by the Cover Your Butt Campaign. About a week after that – on Wednesday, March 19th – we’ll be urging everyone across the US to participate in the Congressional Butt-In, a one-day phone blitz to Capitol Hill.

Take action. Put your Members of Congress on notice that they will be hearing from you and many others throughout Colorectal Cancer Awareness Month about the importance of making colorectal cancer screening available to everyone who needs it.

Anything less is just talk.

Join us on Wednesday, March 19th, 2008 when we demand that Congress covers our butts!

WHO: You

WHAT: Call Congress and demand that they cover your butt!

WHEN: Wednesday, March 19th, 2008

WHERE: By telephone

HOW: Call 866-615-3375 to get connected to Congress

On Wednesday, March 19th, anytime from 9 AM to 5:30 PM EDT, call 866-615-3375.

You only have to make one call. You will be prompted to enter your zip code and be directly connected to the offices of your Members of Congress (your two senators and representative).

When you reach the offices, simply say, “I urge my senator/representative to support colorectal cancer legislation and COVER MY BUTT!”

The more phone calls the offices receive, the better chance these bills have of getting passed so urge your friends and family to join you in the Congressional Butt-In on Wednesday, March 19th!

For more information on the butt-covering bills currently in Congress.

www.coveryourbutt.org

www.fightcolorectalcancer.org

On January 27th.2004,  at the age of 36 years I started a wrenching physical and emotional journey.   I found myself with stage IIIb colon cancer, despite no family history of colon cancer.

I remember the “before and after”, but there is much information I only have because people who surrounded me during my hospital stay have shared it with me. I have gained other information through the process of reading my huge pile of hospital records.  Many pages I am still not able to read because the written relaying of my experience brings such strong sad emotions.

Prior to my diagnosis, for more than sixteen months I was tired, dizzy and weak.  I went to my doctor with these symptomatic complaints, and after some blood tests I was told that my symptoms were the result of an iron deficiency anemia typical of women in my age group.  I was prescribed, and obediently began taking, iron supplements.  If only I’d known then what I know now.

My general practitioner was the overseer of my health, and despite the supplemental iron continued blood work indicated that the anemia persisted.  Additionally, I complained of constipation and was prescribed laxatives to address this issue. Thereafter, the abdominal cramping and pain began and grew worse and worse with time.  I was referred for an upper GI series which revealed a stomach ulcer, and was prescribed a PPI (proton pump inhibitor) to address these issues.  
 
My doctor next referred me to a hematologist-oncologist who concluded that I was a “typical young woman with iron deficiency anemia”, whatever that means.   I later learned, though far too late for my own interests, that there is no such thing as “typical iron deficiency anemia”, and that in every case of persistent iron deficiency anemia colon cancer must be definitively ruled out. 

Sometime later I was finally referred to a gastroenterologist who told me that my symptoms could be indicative of many issues including cancer, but that cancer was highly unlikely due to my age.  He told me to come back in a month for a colonoscopy.  If only I’d known then what I know now.

One day before that month had passed the pain became unbearable so, having no alternative, I went to the emergency room.  I was prescribed pain relievers and sent home. Three hours later, still in unbearable pain, I went to my doctor’s office and saw the physician on call who told me to go back to the hospital.  I did so immediately.  Doctors there decided that I was displaying an appendicitis and prepared me for surgery right away. 

To the surgeon’s surprise when he entered my abdomen laparoscopically, he found a three centimeter tumor in my colon, and converted to a full open surgery.  That tumor was ultimately discovered to be a Stage IIIb adenocarcinoma .  27 lymph nodes were removed and examined, and two of those were positive for metastatic disease.  The tumor had been allowed, through the length of time I’d been given the “run-around” for my symptoms in the previous many months, to burst through the muscularis propria into the subserosa, thus the “b” designation to my Stage III diagnosis.  Ultimately, that has been the defining piece of this medical journey, from the perspective of the cancer at least.  If only I’d known then what I know now.

Unfortunately, during or following the colectomy my colon developed an anastomotic leak.  As a result sepsis developed and numerous emboli (blood clots) followed.  I was rushed to another hospital 80 miles from home with a critically ischemic right foot which resulted in a right below-the-knee amputation following an unsuccessful attempt at a right popliteal embolectomy.  My  course at this hospital was complicated by an ischemic anastomosis of my colon requiring an ileocecectomy and the placement of an ileostomy on February 2, 2004.  I also had respiratory failure, (ARDS) , underwent aortic stenting for a stenosis which developed in my abdominal aorta, and I developed multiple hepatic infarctions which were initially thought to be metastatic liver disease.

I was in the hospital for a month in an induced coma.  When I woke,  my mother and younger brothers who had flown in from Portugal due to my dire condition, and my older sister and her family from Canada, were around me.  They were told on many occasions I might not survive. 

I remember looking at my body and seeing that I had a colostomy and a feeding tube.  I had no idea what had happened and what those were.  Moreover, my foot was missing.  I  was in a daze, having gone to sleep with an appendicitis and having woken a month later with a cancer diagnosis and one less leg. 

I thought that the cancer was something I could deal with.  But a missing limb would create a dramatic change in my life.  I knew nothing about being an amputee, nor had I expected to wake being one.  How would I walk again?

From the time I had left my home in late January to this time on the 26th of February a month of my life had gone by.   More importantly, my son did not have a mother for that period of time.  He watched as I left for the hospital in pain and his last piece of information was that I would be having surgery to remove my appendix and would be fine and probably home the next day.  That day turned into a month, and my young son could only speculate within his very young mind what might have happened to keep me away from him for so long.  We were very close, and suddenly I could not even speak with him on a telephone.  I was just gone.  If only I’d known then what I know now.

Eventually, my son was apparently brought to see me for a few moments, but I was terribly ill and was in and out of consciousness, and I did not remember seeing him.
My baby boy.  My heart.  My joy.  My life.  If only I’d known then what I know now.

I survived all of that thanks in part to a highly skilled surgeon who fought hard to save my life and in part to the “mother’s will” I possess in connection to my son.  I was eventually transferred to a rehabilitation hospital closer to my home for two more weeks of recuperation.  There I had to learn to walk and to do many daily tasks we all take for granted as simple.  I was fitted with a temporary prosthesis but could hardly stand on it because I weighed only 90 pounds.  I was very weak due to muscle atrophy from being in bed for so long.  I was forced to use a wheelchair until my arms and body were strong enough to use a walker.  I came home with that wheelchair, still unable to walk.  

I remember a maze of medical appointments, blood work, physical therapy and occupational therapy.  I was not able to take care of my son or work. I went from a young, single, active, self-employed mother of a 12-year-old boy to a completely dependent person who could not so much as walk. It was two years before I could shower without a bench sitting in a tub, two years before I could wear a prosthesis that allowed me to stand up.  I could not even endure chemotherapy in this condition, and thus cancer treatment had to take a back seat to healing from the amputation.

I had a wonderful boyfriend who stayed with me in the hospital through everything. When I came home he carried me into the house, and my mother had to stay with me for a while to help me since I was unable to do anything. I could not drive myself to my appointments and I had to be wheeled around everywhere. My relationship with this amazing man did not survive the stress of it all, though we are now very good friends.  I learned a lot about myself when I realized that he did not care as much about how I looked as he did about the person I was.  Having him by my side through it all was empowering from a woman’s perspective.  I was no longer the woman I was when we had met.  I looked completely different, but he didn’t care.

Following the healing process, I began a course of chemotherapy, six months of 5FU and Leucovorin.  In July 2005 I underwent a reversal of my ileostomy.  My ovaries were in questionable condition and so were removed during this surgery.  I am now going through menopause.

In April 2006 my CEA began to rise and I had a PET/CT.  Two focal areas were found to be consistent with metastatic disease in my peritoneal cavity.   I began another six months of chemotherapy in the form of FOLFIRI.  A repeat scan in December of 2006 revealed that the smaller of these two lesions was no longer evident on  CT/PET, and the larger of the two lesions was 55% reduced. However in March of 2007 it was shown to have regained its growth, and despite some resistance from my physicians and a refusal of coverage by my health insurance company, I took the advice of several experts polled by my best friend and in June of the same year had Cyberknife to the largest and most persistent retroperitoneal lesion at Saint Anthony’s Hospital in  Oklahoma City, Oklahoma. 

In August of 2007 after another follow-up scan I learned that another nodule was found in my peritoneal cavity, near my left kidney.  I am currently undergoing several cycles more of FOLFIRI to address that measureable lesion and any other disease which may be present but as yet unmeasureable.

I have accomplished many new things in my life since all of this happened to me.  I have started an amputee support group in my area of which I am currently the treasurer.  I am also a certified peer group visitor which gives me the opportunity to assist others along the road of recovery and rehabilitation while adjusting to life as an amputee.

Although I am in treatment I am living life fully, raising a beautiful son who is now 16 and is a wonderful, caring and patient young man.

I am surrounded by amazing friends.  We have what we lovingly refer to as a “Sisterhood”and we carry each other through good and bad always, without question or hesitation.

The members of my family of origin have been amazingly supportive as well.  And although we live so far apart we are always together in spirit, and are only a flight or drive away.

I have a wonderful new man in my life and I am engaged.

In March of 2007 I went to the United States Capitol as an advocate for the Colorectal Cancer Coalition, where I shared my story with my Senators and Congressman to advocate for increases in the budget for NIH and CDC cancer research.  I am honored to have been invited to be a member of C3’s steering committee, and I am involved in the development and launch of their new “Cover Your Butt” campaign.  For the very first time, while I was in Washington I met colon cancer patients and survivors my age.  They inspired  me with their strength and passion.

 I have been invited to participate in the Maine Buddy Program with the Cancer Community Center in my state and intend to do so in the near future.

I celebrated my 40th birthday in August and my life was fully celebrated (surprise!) by my family and friends who had been told a few years prior that it was a birthday I would likely never see.  Even the surgeon who saved my life participated in that celebration.  And one of my State Senators honored the milestone of my 40th birthday by having a flag flown over the United States Capitol in my honor.

I have asked “why me” many times…until I realized that I am here because I am strong enough to endure what I have faced.  I believe God has sent all of these experiences my way asking me to use them to support or lift or maybe even save someone else … that is how I intend to use what I didn’t know then, but certainly know now.

I have HOPE….